Peripheral T cell NOS Non Hodgkins lymphoma

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  • michellelemon
    michellelemon Member Posts: 31

    How is it going?

    Praying that this will turn out to be nothing serious. I understand though why you are concerned. What did the oncologist say? Please give your dad a hug and keep us updated.

    Thanks!

    Dad's rash seems to be subsiding - and all attempts at my insistence that we notify the oncologist ( I said , at least we could just simply call the nurse there just to get her take), were met with little enthusiasm or cooperation.  It's a delicate balance between helping and taking over, which I am trying to embrace... His energy level is better too so we pray that it is/was nothing major. Will hug him for sure!:-) How is Mallory?

  • michellelemon
    michellelemon Member Posts: 31

    Thanks!

    Dad's rash seems to be subsiding - and all attempts at my insistence that we notify the oncologist ( I said , at least we could just simply call the nurse there just to get her take), were met with little enthusiasm or cooperation.  It's a delicate balance between helping and taking over, which I am trying to embrace... His energy level is better too so we pray that it is/was nothing major. Will hug him for sure!:-) How is Mallory?

    Father's Day

    So what do I get for my 77 year old, peripheral t-cell, NOS cancer/stem cell transplant survivor father for Father's Day? So glad he  is here! with us and doing pretty well. He needs new knees - the spirit is willing, but his knee issues are inhibing his mobility somewhat. It is not a new thing - he was rejected, after being drafted for the Korean War (!), due to his knee issues (old football injury), and they have come back to haunt. I have suggested knee replacement surgery several times, and he is not adverse to ti, so we shall see.... He has to keep up with 83 year old Mom!:-) The love and bond they have - unbelievable - after 55 years of marriage! Prayers for all!:-)

  • anliperez915
    anliperez915 Member Posts: 770
    po18guy said:

    Monthly

    Hey, Cathy! Not surprising that it relapsed immediately. CHOP is a real hit or miss regimen - but there is no recommendation for PTCL. I had dose intensive CHOP plus Etoposide (CHOEP) for four cycles, followed immediately by four cycles of GND (Gemzer, Navelbine and Pegylated Liposomal Doxorubicin). Mine relapsed immediately, as well. That is when the clinical trial of Romidepsin (Istodax) opened up. I entered the trial and went into complete response. I have remained there now for over four years. I was receiving infusion for 3 weeks in a row, then a week off for my blood to recover. After a bit over a year in remission, I dropped to treatment every two weeks. Another year after that, and I went to single monthly treatments, and scans are still clear. Where we go from here is anyone's guess - we simply don't know, as we are experimenting.

    Be careful with all alternatives, and please run them by doctor! Immune boosters are fine, but skipping sugar has zero value. Why? Our blood requires sugar for cellular and organ function. Our blood sugar level is very closely regulated or we become diabetic, or hypoglycemic. The same with alkaline water and other supposed cures. If we were in a Petrie dish, all of this might work, but our bodies function in a very narrow and precisely regulated range. If we starve the cancer, we also starve our body - there is simply no way around this, since the cancer is a part of our bodies. Now, targeted therapies like Romidepsin single out the tumor cells for destruction and basically leave the healthy tissues alone.

    Here is a T-Cell Lymphoma presentation that was put on by my doctor, a T-Cell Lymphoma specialist at Fred Hutchinson: http://www.presentme.com/audio2012/20121111LRFShustov/

    Yes, CSN is not asy to find replies on. Best to begin your own thread and check it daily for posts. Thank you, as prayer has sustained me.

    Jim 

    Hi Jim

    Hi Jim,

    Just had to say something about the alkaline water, a man I don't know came up to me the other day and started telling me about his miracle cures such as the water and wanted for me to drink this alkalined water that's suppose to kill cancer cells, I didn't know what to say but trust me I didn't believe him. I have such luck with attracting those types of people, always trying to sell me the miracle cure for everything! Damn I should already be a millionaire with all those remedies hahaha! Thanks for the information, it's always very informative! Take care

    Sincerely,

    Liz

  • Mallory's mom
    Mallory's mom Member Posts: 7

    Just Checking in

    Mallory's Mom,

    Just checking in to see how things are progressing. I am praying this finds you all doing well.

    XXXOOO

    Carie

    Carie

    Mallory continues to get a little better everyday. Still has trouble with headaches especially if she  is sick in any other way. She had a bad case of the stomach flu and ended up in the ER for fluids and also a shot of Demerol to control her headache. How are you doing? Does the Imitrex seem to be working? Where are you at with your other treatment? It is good to hear from you.

  • michellelemon
    michellelemon Member Posts: 31
    Continued good news

    Have not been on here in a while but keep all in my prayers!  The latest is that they did a biopsy on Dad's skin rash issue and it turned out to be nothing of major concern - just a reaction to a medication, but he is still cancer free! He has gained back so much weight that he unfortunately was diagnosed as borderline diabetic again. But Mom has him on a strict diet and he has already lost weight and they are giving him the chance to lose more before they put him on medication for it. Good problems to have, I guess, in light of all? His knees are a continued issue and the orthopedist said he was reticent about knee replacement, due to Dad's two previous pulmonary embolisms. Bothers me as there has to be some solution, as he is healthy otherwise but not as mobile as he could be.... but I try to keep the main focus. Cancer free still and basically healthy otherwise, after this bout with Peripheral T cell NOS lymphoma and a stem cell transplant! At 77 now! Continued hope!

  • michellelemon
    michellelemon Member Posts: 31
    Still cannot believe...

    When I initially contacted this website, we were not very hopeul, as I scoured the net for survivors of this, finding none. I was watching my father dying, his lymph nodes all cancer ridder and his lymphatic system shutting down. I do not take a moment for granted that he is here with us, still cancer free and doing well. I wish to offer continued hope  to new diagnosies and pray for those and their families who have not had as much good fortune in dealing with this.

  • michellelemon
    michellelemon Member Posts: 31
    Merry Christmas!

    I hope all are well and able to enjoy a lovely Christmas. So blessed that Dad is still doing well, cancer free, and able to look forward to all three of us children and several grandchildren for Christmas. We do not take these things for granted. Prayers and good thoughts for all who have struggled/are struggling through this.

  • michellelemon
    michellelemon Member Posts: 31
    Continued hope and good news!

    Just went to the cancer clinic in Tampa for Dad's yearly follow up - post transplant. His local oncologist, last month, had a slight concern about some seeming enlargement in one of his lymph nodes and ordered a Petscan, to make sure. Thankfully, the Petscan was clear, and the Doctor in charge of his stem cell transplant was quite satisfied with his health and progresss, and said that, in fact, there was no real medical reason to return anymore at this point (although he said he was always welcome at any time!). Again, when we were first presented with this all, we had no idea where to begin, or what we were in store foro, andthere existed little hope in my searches on the internet ... and are quite grateful for how well all has turned out, and wish to continue to offer hope for others!

  • Crystalyn717
    Crystalyn717 Member Posts: 2
    37 year old husband diagnosed with PTCL NOS in his lungs only

    it's nice to actually find some people who have experience with this rare disease. My husband was just diagnosed on 10/30/14 with Perioheral T-cell lymphoma NOS. He has been sick since June 2014. however, 40 mg of prednisone made him feel a lot better and made the masses in his lungs decrease. He is currently onmy on 10mg of prednisone and new nodules are growing. His last PET scan showed no other involvement. No other lymphnodes or bonemarrow either. He was due to start CHOEP yesterday at MD Anderson but he developed an infection due to his wisdom teeth. Now he will have to have them removed next week and take 14 days of antibiopics before chemo can start. After 4-6 rounds of chemo he will do an auto stem cell transplant. We are scared that he may get worse in the next two weeks waiting on the healing of the surgery so we are praying this does not effect a positive outcome of treatment. I am also 29 week pregnant with our first child so this has been extra scary for us. 

    Has anyone ever heard of PTCL presenting just in the lungs? We've been told it is almost never the case.

    Best wishes to all of you who are dealing with this rare disease in some way. God bless!

  • po18guy
    po18guy Member Posts: 1,461 Member

    37 year old husband diagnosed with PTCL NOS in his lungs only

    it's nice to actually find some people who have experience with this rare disease. My husband was just diagnosed on 10/30/14 with Perioheral T-cell lymphoma NOS. He has been sick since June 2014. however, 40 mg of prednisone made him feel a lot better and made the masses in his lungs decrease. He is currently onmy on 10mg of prednisone and new nodules are growing. His last PET scan showed no other involvement. No other lymphnodes or bonemarrow either. He was due to start CHOEP yesterday at MD Anderson but he developed an infection due to his wisdom teeth. Now he will have to have them removed next week and take 14 days of antibiopics before chemo can start. After 4-6 rounds of chemo he will do an auto stem cell transplant. We are scared that he may get worse in the next two weeks waiting on the healing of the surgery so we are praying this does not effect a positive outcome of treatment. I am also 29 week pregnant with our first child so this has been extra scary for us. 

    Has anyone ever heard of PTCL presenting just in the lungs? We've been told it is almost never the case.

    Best wishes to all of you who are dealing with this rare disease in some way. God bless!

    More hope than ever

    CHOEP was my primary therapy, and it killed an awful lot of PTCL. I had GND (Gemcitabine, Navelbine and Doxil) as consolidation therapy and the end of it was tough. Even so, it came right back. Relapses are common in T-Cell Lymphomas and I am in my 4th battle now. But, the signs look good so far in a clinical trial. As to your husband, MD Anderson is one of the very few places on earth to be if you have this stuff, so he is receiving some of the best treatment on earth there. All the best to you. 

  • michellelemon
    michellelemon Member Posts: 31
    po18guy said:

    More hope than ever

    CHOEP was my primary therapy, and it killed an awful lot of PTCL. I had GND (Gemcitabine, Navelbine and Doxil) as consolidation therapy and the end of it was tough. Even so, it came right back. Relapses are common in T-Cell Lymphomas and I am in my 4th battle now. But, the signs look good so far in a clinical trial. As to your husband, MD Anderson is one of the very few places on earth to be if you have this stuff, so he is receiving some of the best treatment on earth there. All the best to you. 

    Offering prayers, hope and thanks

    I will keep all in my prayers who are still, or just beginning, to battle this. And those who may have not made it through. Frown  I do want to offer continued hope for all. We just celebrated my Dad's 79th birthday! (Sort of hard to believe this all began six years ago) and he is still cancer free, please God. He still has his occasional checkups with the oncologist and they choose to keep the port in his chest... a bit of a reminder. As technology advances, there may be more up to date forums for such. But I am just grateful for this one and being able to ask for support and offer hope. God bless all!

  • Mcdv1
    Mcdv1 Member Posts: 1

    Offering prayers, hope and thanks

    I will keep all in my prayers who are still, or just beginning, to battle this. And those who may have not made it through. Frown  I do want to offer continued hope for all. We just celebrated my Dad's 79th birthday! (Sort of hard to believe this all began six years ago) and he is still cancer free, please God. He still has his occasional checkups with the oncologist and they choose to keep the port in his chest... a bit of a reminder. As technology advances, there may be more up to date forums for such. But I am just grateful for this one and being able to ask for support and offer hope. God bless all!

    New to all this...

    my mom is 72 and just got diagnosed with NHL - T-cells...prob arises when pathologist after 2wks still can't determine if it's viral or what?  They say hers is so rare that they really don't know how to approach it but like many here it seems they start with CHOP.  Shes already lost weight so I worry starting chemo will just be that much harder... I struggle with having known 3 others personally who have fought the good fight only to go thru so much and still die... I struggle with knowing that my parents are a bit naive about all the chemotherapy and the ups and extreme downs they will go thru...there are 6 of us kids and being so early in this mess we just aren't communicating well so I've shut down... I don't want to reply to anymore calls or text... It's frustrating and so tiring... I think and over think it all... I live 8hours away from my mother and I would love to just drop life where I'm at and be at her side , but I struggle with the fact that I am the babysister for my nearly 2yr old granddaughter and although there are other family nearby that could help I struggle even more with that knowing how I missed my daughter being molested by her own uncle... I can't leave her and I can't not be by my mothers side and I'm receiving pressure all around... I'm just stressed worried and at a loss as to what to do... My sister will be with mother soon and will stay thru 3 sessions of her chemo... But my parents still insist I must be... I feel it's because I have been always much closer to them as in practically daily calls and of course visits... I don't know which way to go...

  • lindary
    lindary Member Posts: 711 Member
    Mcdv1 said:

    New to all this...

    my mom is 72 and just got diagnosed with NHL - T-cells...prob arises when pathologist after 2wks still can't determine if it's viral or what?  They say hers is so rare that they really don't know how to approach it but like many here it seems they start with CHOP.  Shes already lost weight so I worry starting chemo will just be that much harder... I struggle with having known 3 others personally who have fought the good fight only to go thru so much and still die... I struggle with knowing that my parents are a bit naive about all the chemotherapy and the ups and extreme downs they will go thru...there are 6 of us kids and being so early in this mess we just aren't communicating well so I've shut down... I don't want to reply to anymore calls or text... It's frustrating and so tiring... I think and over think it all... I live 8hours away from my mother and I would love to just drop life where I'm at and be at her side , but I struggle with the fact that I am the babysister for my nearly 2yr old granddaughter and although there are other family nearby that could help I struggle even more with that knowing how I missed my daughter being molested by her own uncle... I can't leave her and I can't not be by my mothers side and I'm receiving pressure all around... I'm just stressed worried and at a loss as to what to do... My sister will be with mother soon and will stay thru 3 sessions of her chemo... But my parents still insist I must be... I feel it's because I have been always much closer to them as in practically daily calls and of course visits... I don't know which way to go...

    pressure

    First you must stop blaming yourself for not realizing the molestation. It is a horrible thing to have happened but if it was a relative that you otherwise had every reason to trust, how could you have predicted suh a thing. I have an opposite situation. I would never let my girls stay overnight with my in-laws becaue I didn't trust my father-in-law. The man died over 10 years ago but to this day my husband thinks I am nuts to have felt that way about him. 

    I think you should work with your daughter to come up with a way that your grandaughter can be cared for so you can spend some time with your mom. Is there a way your daughter & granddoughter could even come with you? I hope you can work something out so you can see your mom.

  • Kary
    Kary Member Posts: 3
    Lymphoma Pheriperal T cell NOS

    Hello! I live in Brazil and my beloved father, 65, was diagnosed with peripheral T-cell lymphoma unspecified, stage II, made 6 sessions of CHOP and 20 radiotherapy sessions.We finished the treatment last week and is in remission from the third chemotherapy. Given the high recurrence rates of this rare type of cancer, I would like to share experiences. Thanks.

  • annie3
    annie3 Member Posts: 1
    Kary said:

    Lymphoma Pheriperal T cell NOS

    Hello! I live in Brazil and my beloved father, 65, was diagnosed with peripheral T-cell lymphoma unspecified, stage II, made 6 sessions of CHOP and 20 radiotherapy sessions.We finished the treatment last week and is in remission from the third chemotherapy. Given the high recurrence rates of this rare type of cancer, I would like to share experiences. Thanks.

    PTCL NOS

    Hello.  I am glad your father responded so well to Chemo and Radiation. My husband was diagnosed with PTCL NOS on November 2013. He started 6 sessions of R-CHOEP in January and was in remission after the fourth round.  Had an autologous stem cell transplant which is the protocol in the US. it has a 50% chance of curing the patient. Unfortunately, as strong as my husband is (he is 65 now and never got sick from chemo or transplant and felt basically very good throughout the whole ordeal), the cancer recurred almost a year later. He will now go on one of the varipous clinical trials available in NY. After that he will have an allogeneic transplant.  This relapse was so shocking because in December everything was completely fine. he has no symptoms and looks great. Fortunately he is in very goos spirits and gowing forward with a lot of hope.

    Good luck for everyone battling this beast and please tell us how you or your loved ones are doing.

  • Kary
    Kary Member Posts: 3
    annie3 said:

    PTCL NOS

    Hello.  I am glad your father responded so well to Chemo and Radiation. My husband was diagnosed with PTCL NOS on November 2013. He started 6 sessions of R-CHOEP in January and was in remission after the fourth round.  Had an autologous stem cell transplant which is the protocol in the US. it has a 50% chance of curing the patient. Unfortunately, as strong as my husband is (he is 65 now and never got sick from chemo or transplant and felt basically very good throughout the whole ordeal), the cancer recurred almost a year later. He will now go on one of the varipous clinical trials available in NY. After that he will have an allogeneic transplant.  This relapse was so shocking because in December everything was completely fine. he has no symptoms and looks great. Fortunately he is in very goos spirits and gowing forward with a lot of hope.

    Good luck for everyone battling this beast and please tell us how you or your loved ones are doing.

    Hello! I sincerely hope that

    Hello! I sincerely hope that your husband get well soon. It heal, please send me news. My father is well, he is strong. Side effects of treatment if they left. He is working normally. Next week will do further tests to check for disease control, will do a CT scan and in three months will make a new petscan. Which hospital the name of your husband comes. It is public? I wonder what the clinical trial it right now. As I said doctors used the CHOP and radiotherapy. Only a medical wondered the possibility of an autograft. His stage was II, which stage of your husband? Lots of light and faith to you guys. Hugs.

  • Kary
    Kary Member Posts: 3
    annie3 said:

    PTCL NOS

    Hello.  I am glad your father responded so well to Chemo and Radiation. My husband was diagnosed with PTCL NOS on November 2013. He started 6 sessions of R-CHOEP in January and was in remission after the fourth round.  Had an autologous stem cell transplant which is the protocol in the US. it has a 50% chance of curing the patient. Unfortunately, as strong as my husband is (he is 65 now and never got sick from chemo or transplant and felt basically very good throughout the whole ordeal), the cancer recurred almost a year later. He will now go on one of the varipous clinical trials available in NY. After that he will have an allogeneic transplant.  This relapse was so shocking because in December everything was completely fine. he has no symptoms and looks great. Fortunately he is in very goos spirits and gowing forward with a lot of hope.

    Good luck for everyone battling this beast and please tell us how you or your loved ones are doing.

    Hello! I sincerely hope that

    Hello! I sincerely hope that your husband get well soon. It heal, please send me news. My father is well, he is strong. Side effects of treatment if they left. He is working normally. Next week will do further tests to check for disease control, will do a CT scan and in three months will make a new petscan. Which hospital the name of your husband comes. It is public? I wonder what the clinical trial it right now. As I said doctors used the CHOP and radiotherapy. Only a medical wondered the possibility of an autograft. His stage was II, which stage of your husband? Lots of light and faith to you guys. Hugs.

  • Kelsey99
    Kelsey99 Member Posts: 2
    po18guy said:

    More hope than ever

    CHOEP was my primary therapy, and it killed an awful lot of PTCL. I had GND (Gemcitabine, Navelbine and Doxil) as consolidation therapy and the end of it was tough. Even so, it came right back. Relapses are common in T-Cell Lymphomas and I am in my 4th battle now. But, the signs look good so far in a clinical trial. As to your husband, MD Anderson is one of the very few places on earth to be if you have this stuff, so he is receiving some of the best treatment on earth there. All the best to you. 

    po18guy how are you now?  My

    po18guy how are you now?  My husband has PTCL NOS Stage II.  I am concerned about relapses and you have kept fighting on.